A brief primer for those who are new to the subject of FVL:
"Factor V Leiden" (FVL) is a description of a specific mutation. What that
mutation causes is "Activated protein C resistance." All people with FVL
have activated protein C resistance to one degree or another. However, it
*is* possible to have activated protein C resistance without having FVL.
There are probably certain other populations where APCR (Activated Protein
C Resistance) is "acquired" through disease or environmental problems. The
most common cause of APCR is FVL.
Activated Protein C resistance means that when your body forms clots, those
clots are more durable than they should be, which means they don't break
down as easily as they ought to and they grow faster than they should. One
hematologist said he thinks of it as "clot formation not slowing down the
way it is supposed to." Activated Protein C is a natural anticoagulant in
the blood.
There are many, many other causes of thrombophilia (tendency to clot
excessively), many of which are genetic. Some people have more than one
form of thrombophilia and there are many degrees of it even in people with
"identical" seeming genetic mutations. Some people are fine during most of
their life (including things like pregnancy) and then suddenly have problem
after problem for a period of time and then are fine again for a long time.
Some people never have a problem. Some people constantly have problems.
Lifestyle factors like smoking, poor diet, lack of exercise, dehydration,
pregnancy, and birth control pills can dramatically increase the risk of
clotting. However, some people "do everything right" and still have
problems. This is why each individual with FVL or other thrombophilia must
be evaluated on a case-by-case basis. It is also a reason why people with
FVL should learn as much as possible about risk factors and lifestyle
issues before they decide between the risks of clotting with minimal
anticoagulation or the risks of bleeding with therapeutic anticoagulation.
The risk/benefit ratio will be somewhat different for every person.
While the risks associated with FVL can be severe (pulmonary embolism can
kill someone extremely quickly and make resuscitation difficult or
impossible by blocking the oxygenation capacity of the lungs), FVL is NOT a
death sentence. Many, even most people with FVL live long lives and die of
something else. It simply makes certain behaviors and choices more risky
than they might be otherwise, and requires a bit more caution and thought
in daily living.
When I compare living with the knowledge that I have FVL to diabetes or
other chronic illnesses, I see that my life is much less affected by FVL
than it might be by other conditions. On a daily basis, food allergies are
more annoying than the need to get up and move around every hour or two. If
I were on medication, it would be very different. I've been on coumadin,
seen my mother on heparin, and I've seen my dad on insulin and they're
pretty similar in level of life impact on a day-to-day basis. The risks are
different but the nuisance level is about the same.
by Jennifer Rosenberg
Jennifer Rosenberg has been trained as a doula and childbirth educator. She currently works as a graphic designer, editor and author for Midwifery Today, Inc.
Reprinted from Midwifery Today E-News (Vol 2 Issue 19 May 12, 2000)
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